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December 28, 2014

Let us be silent, that we may hear the whispers of the gods.

-Ralph Waldo Emerson


(Image is of our Christmas tree on Christmas morning surrounded by many festively wrapped packages)

I’ve been quiet here for a while. It’s not that I have had nothing to say, but more that I’ve been pondering on how to say it. It’s been a whirlwind few months for us. We got back from Disney World about 3 months ago. Then it was Mary’s birthday and the rapid succession of doctor’s appointments that usually follows that. It’s been a lot to process, as it often is. So I’ve avoided writing here because I’m still not sure what to say….

We’ve added some new members to our team. New folks with new ideas. The new ideas all circle back to the original though, and in going back over various test results, we have been forced – all of us- to admit that Mary does, in fact, have mitochondrial disease. It is secondary, meaning it is caused by something else- some other, still unknown, genetic syndrome. But, still, there it is, clearly indicated on a skin biopsy that she had done a few years ago. And there it is in all of her symptoms. I’ve been wrestling with this one a lot recently.  After so much testing, so many specialists, it was almost easy to tell myself that this mito thing was abstract and unreal. Because until they actually wrote it down on her file, then, I could deny it.  I told my family not to get all worked up about it- after all it’s secondary, right? But it still scares the crap out of me. It’s still there, every bit as malicious and dangerous as if it were called anything else.

“She’s stable for now”, they tell me. “Enjoy this.” What do I do with that? The problem with mitochondrial disease is that there is no victory over it.   My mother is a ten year cancer survivor. That is amazing. But there will be no victory over mitochondrial disease for Mary in that sense. The truth is, that while many kids will remain stable for some time, even years,  it is progressive, and life-limiting.  And there is no cure. And after years of wondering, and denying, the truth is, that this was the card we were dealt.   There’s a facebook group of mitochondrial families that I follow. Whenever a child dies, a green candle goes up in my news feed. As the colder weather has moved in, those candles have been coming more frequently. A reminder of how precarious all of this is.

The thing that I think a lot of folks have trouble wrapping their heads around is that not all mito kids start out really sick. They don’t all die by age two. A lot of them are seemingly minimally affected. Until one day they come down with the flu or a bad cold that they just couldn’t fight off. The exertion of the fight suddenly leaves their bodies exhausted and vulnerable, and even in organ failure. From a cold. From the flu. And there is just no way to know which infection is going to trigger it…. As a parent, it’s an exhausting, terrifyingly helpless feeling.

As I write this, Mary is upstairs sleeping. She’s been sleeping a lot these last few months. She’s fighting off her second cold of the season, thanks to preschool germs. She’s been sick. She’s been tired. It’s been hard. She’s feeling a little better today, thanks to a hefty dose of antibiotics, but we’re laying low. We were supposed to be visiting family and friends in New England today. We were supposed to be at a family Christmas party. I cancelled the trip. It was too big of a risk.  She needs the rest. I’ve pushed her in the past, and it’s never been a good idea. Besides that I realized that I would likely be exposing her to even more germs by going up there. It wasn’t an easy choice. I want her to be able to get to know the family and friends that we have up there. I want so badly for them to get to know her. To really know her. To see her. Time is so precious….

I know they say they understand, but I can hear the disappointment and frustration in their voices on the phone as I try to tell them why we can’t come. I know they think I’m overprotective, or maybe just lazy in not wanting to make the drive…. What they can’t possibly understand, and what I’m afraid to speak out loud, is the sheer terror that consumes me when I hear her sniffle, or sneeze. Then panic and helplessness that I feel when she gets sick. They can’t understand the anger I feel when someone neglects to warn us that they are fighting off a cold when they make plans with us.  Because they don’t live it. They don’t stay up all night holding her while she struggles to catch her breath. They don’t snuggle with her on the couch when she’s too tired to open her Christmas gifts on Christmas morning. They don’t see the blood test results as they come back in, showing how hard her little body is fighting. They don’t see the regressions that often follow her illnesses. But I can’t let myself live there long. I can’t dwell on the scary. I can’t take the time to worry about the judgment of others. Because she needs me. and so do my other children. They need me to be fully present for them.

So, now that we know a little about what we’re up against, I guess the question is what do we do? I guess the answer to that is, we use the time we were given. We make the most of it. We relish the cuddles. We soak up the laughter, we make more memories together than we ever thought we could. We use as much hand sanitizer as we can and pack as many little adventures into our lives as possible.

And so it is that we will spend this Christmas vacation cuddling on the couch with Disney movies, or playing with our new toys and books under the Christmas tree.  There will be no big family gatherings for us this year- and a part of me will be grateful for the silence, for the break, for the time. We  have to recharge our batteries for a brand new year of adventures, after all.

I hope that you and your families are enjoying a peaceful and joyous Christmas season.


(Image is of Mary laying on the floor in front of the Christmas tree, using her new, very large, stuffed dog as a pillow as she plays with the sensory ribbon barcelets she got for Christmas.)

3 Comments leave one →
  1. December 28, 2014 10:06 pm

    I’m so sorry to hear this devastating news. Mary, you and the rest of your family will continue to be in my heart, thoughts and prayers. I will also pray for a miracle for little precious Mary.

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